Health-related quality of life in pediatric bone marrow transplant survivors: According to whom?

Historically, health-related quality of life (HRQL) assessment in pediatric s, including the few validated instruments in pediatric oncology, has been based on proxy reporting, relying primarily on parental assessment. Childre n have been deemed incapable of providing consistent and reliable informati on about their level of functioning or state of well-being. Previous studie s have been hampered by either limited or poor correlation among the proxy reporters, i.e., teachers, parents and physicians, and in comparisons to di sease severity. Simply stated, proxy reporters have greater agreement about what the child can do vs. what the child thinks or feels. Comparisons amon g proxy reporters have been hindered also by a lack of parallel content in the instruments used, which may result in poorly congruent assessments simp ly because the instruments measure different constructs. In addition to the measurement issues, the emotional milieu of the parent, particularly the m other, has been shown to influence assessments of the child's functioning. Maternal distress, marital adjustment and health locus of control all co-va ry with reports of the child's behavior. What, then, is the proxy reporter telling us about the child? We conducted a cross-sectional study of school- aged pediatric bone marrow transplant (BMT) patients at our institution to evaluate children's self-reported HRQL and functional status, We formally t ested the Child Health Rating Inventories (CHRIs), a recently developed gen eric hearth-status measure, with its companion measure, the Disease Impairm ent Inventories-Bone Marrow Transplant (DSII-BMT). Separate questionnaires were administered to patients, parents and physicians at a scheduled outpat ient visit after BMT. The questionnaires were designed to have parallel con tent. All responses were confidential, The psychometric properties of the C HRIs and DSII-BMT are reported elsewhere. In brief, the responses of all ra ters were reliable, based on measurements of internal consistency. The chil dren's self-reported health status was correlated significantly with the ph ysicians' disease severity rating (DSR) across all generic and disease-spec ific domains. In contrast, parental reports of child health status were not correlated significantly with the DSR for disease-specific problems or the child's pain. Parental ratings deviated most from the children's ratings w ithin the dimensions of mental health and quality of life (p < 0.001), For the entire sample, parental ratings were significantly lower than the child ren's ratings. Within the subgroup "early after transplant (<6 months)", pa rental ratings were significantly lower than the children's self-reports in all categories. in the subgroup "> 12 months after transplant", with the e xception of mental health and quality of life, parental scores were the sam e as or higher than the children's ratings. Our results confirm previous st udies that the parental reporting of children's health status is a complex construct and that valuable information can be elicited directly from the c hildren. Further research is needed to substantiate these findings, particu larly in longitudinal applications with adequate sample sizes. Int. J. Canc er Suppl. 12:46-51, 1999, (C) 1999 Wiley-Liss, Inc.